Receiving bad health news can spark great upheaval. It is a time when nothing seems certain and the future may look dark. Since its release this summer, the free AfterShock: Facing a Serious Diagnosis app has provided users with a basic roadmap through the first few days and weeks after a serious diagnosis, providing concise information and trusted resources to help regain a bit of control during this turbulent time. As one reviewer wrote, the AfterShock app is "a standard for empowered patients"...

If clinicians are to fully embrace and succeed with value-based payment and population health, it is crucial that they incorporate patient-generated data into EHRs to build a more complete picture of a patient’s life outside of the doctor’s office, at home, where she “lives, works, plays, and learns”. But new research from PwC’s Health Research Institute has found there is a big difference between what doctors and patients think about the self-care concept...

New research in the Journal of Adolescent Health finds that when a young person moves from pediatric care to an adult practice, the transition is eased and better care is provided when formal processes are in place for the handoff.

We'd all like to believe that the average physician would have some clue about a medical crisis happening within a family she's been caring for during the past three decades. But it ain't necessarily so. If you've ever been discharged from a hospital by one doctor only to later be readmitted to the hospital under a different doctor's care, you may be surprised to learn that those doctors are not likely talking to each other...

Ninety-one percent of doctors are concerned about giving patients access to their detailed electronic health records, anticipating patients will feel anxious about the results. Only 34 percent of consumers are concerned about anxiety-due-to-EHR-exposure. Welcome to the digital health chasm, the gap between what consumers want out of digital health and what doctors believe patients can handle...

Finding good health care and making the most of it is critical for each of us. Yet all too often, reliable, unbiased information is hard to find and understand. On the redesigned Be a Prepared Patient website, we have collected trusted resources and tips to help people navigate their way through health and health care decisions and experiences...

"At the end of the day, there is a growing recognition that we need people to take better care of themselves. Too much money is being spent on the consequences of unhealthy choices and on health care. We don't think that patient engagement is just the flavor of the week. The concept of how we can take more responsibility for our health and health care is not going away." – Janice Prochaska, PhD, President and CEO of Pro-Change Behavior Systems in South Kingstown, RI

I am writing this post while seated comfortably in a motorized leather recliner with a window view and lots of other perks. What a legacy we would leave Saskatchewan citizens if we could figure out how to extend this first-class patient care to all patients and their families wrestling with chronic disease...

Not long ago, the only options my patients had for communicating with me were to come in to the office or relay a message through the office staff. But since recently introducing the patient portal in our electronic medical record, my practice has changed substantially for the better...

"There's a prevailing attitude on the side of clinicians that looking for and using [our own] information is not good behavior on our parts. I think that attitude is a big barrier; people don't want to be seen as troublemakers for asking too many questions, disagreeing with a clinician, or bringing information to the table." – Kelly Young – Patient Advocate, President of the Rheumatoid Patient Foundation, and Founder of Rheumatoid Arthritis Warrior blog

"Employers have an opportunity to reduce barriers and support engagement because they sponsor health plans and can provide access to information, tools, technologies, incentives, and more. Employers have more ability to influence engagement than they often believe they have." – Michael Vittoria, Vice President, Corporate Benefits, MaineHealth, Portland, ME

I just got off the phone with a very upset patient who discovered that her pharmacy has been giving her the wrong medication for the past five months. Despite all our fancy technology and advances in health care, medication errors can and will occur. So what can you do, as a patient, to be sure that your prescriptions are correct?...

Receiving bad health news can spark great upheaval. It is a time when nothing is certain and the future looks dark. The new, free app 'AfterShock: Facing a Serious Diagnosis' offers a basic roadmap through the first few days and weeks, providing concise information and trusted resources to help you regain a bit of control during this turbulent time...

"When I think of patient engagement, I think of a partnership where people work together to figure out what the patient wants and how to support the process. Engagement is the knowledge base, working through the decisions and helping people to become full partners in their health outcomes." – June Simmons, MSW — Founding President and CEO, Partners in Care Foundation, San Fernando, CA

What is patient engagement and what does it take to accomplish? With the support of the Robert Wood Johnson Foundation, CFAH set out to explore this concept as it was viewed by various diverse stakeholders. Our interviews with 35 key health care stakeholders lead to an impressive unity of opinion...

Dedicated to promoting behavioral medicine research and the application of that knowledge to improve the health and well-being of individuals, families, communities and populations, Society of Behavioral Medicine created this award to recognize an individual who has made a pivotal contribution to research, practice or policy in the field of health engagement.

If there is a population in which we have the biggest opportunity to see improvements in both cost and quality of care outcomes, it is older Americans. The debate on how best to deliver effective primary care has gone on a long time, sometimes frustratingly so, but it has almost never included a crucial constituency: older adults. The John A. Hartford Foundation is pleased to help change that...

I'm impressed with the health care that is now available to treat diseases that – even a decade ago – were a death sentence. And I'm so very grateful for them. But we and our doctors and nurses often overlook just how much the success of these tools depend on our active, informed participation. And many of us don't fully understand what it takes to participate well in our care...

The Prepared Patient Blog published over two hundred articles in 2013 about what it takes for people to get the most from health care and how the system can be improved to make it feasible for us to do so. Here's a recap of what engagement looks like to us – whether we are sick or well, whether we are caregivers or loved ones: Engagement is not easy and we can't do it alone. Patient engagement is not the same as compliance. It is not a cost-cutting strategy, and it is not one-size-fits-all.

Survey after survey finds that we are concerned about the privacy of our health and health care information. But most of us are confused about what this actually means. We struggle to imagine the range of scenarios in which we lack or lose privacy. And responses from health care stakeholders don't bode well for any real institutional or commercial investment in ensuring that our information is secure...

Outsourcing work to cheaper workers is a common strategy of corporations. It has largely escaped the public’s notice, however, that much of this new labor force isn't located in Southeast Asia, but is rather found here in the U.S. and is virtually free. It is us...

I know a young woman who serves as the primary caregiver for her mother. Watching her put everything on hold to take the helm is both inspiring and heartbreaking. With her stamp of approval, here are ten tips for anyone out there trying to support a caregiver.

Last week, I was interviewed by Dr. Pat Salber and Gregg Mastors on their BlogTalkRadio show, This Week in Health Innovation, about patient-centered care, patient engagement, shared decision making and the cost/quality trade-offs involved, and what all of this means for health care delivery.

Sharing a funny article is as simple as copying everyone on an email or clicking the "share" button on a website. But sharing the results of your medical tests with multiple physicians is rarely so easy. Our resource "Sharing Medical Information with Multiple Doctors" can help.

Not too long ago, I had the misfortune to fall from my bicycle, and within minutes my bicycle and I were on our way to the local hospital via ambulance with serious but non-life threatening injuries. As a result of this incident, I got to experience the health care system first hand, up close and personal. Thus began my unexpected journey as an undercover patient...

Going to the doctor requires you to be prepared with some key information ahead of your visit. There's also important information to gather while you are at your doctor's office or health clinic. These tips can help you make the most of your health care.

I know that each time I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.

I find myself relieved that I don’t have to figure out how to document (or not document?) concerns [in patient records]...Wondering what they are? Ok, I will tell you, but shhh...don’t tell my elderly patients that I may be considering these topics as I care for them.

Have you heard that soon most primary care in the US will be delivered by teams? Yep. Team-based care is one of the characteristics of the patient-centered medical home, a way of organizing the care of patients that allows primary care clinicians to see more patients in a day while at the same time delivering better care.

Most people don’t have the luxury of letting work slip, even when serious illness strikes.
What happens when you have a chronic condition or disability
and the time off you need exceeds your number of sick days?

The essays collected here reflect on what it felt like as a patient with a serious illness, to cobble together a plan with my clinicians that works and to slog through the treatments in the hope that my cancer will be contained or cured and that I will be able to resume the interesting life I love.

On Friday afternoon of Labor Day weekend three years ago, my doctor called to tell me that the pathology report from a recent endoscopy showed that I had stomach cancer. Maybe you can imagine what happened next.

In our current health care environment, in which patients are sometimes discharged quicker and sicker, they are expected to be more in charge activated than ever. They need to make and keep follow-up doctor appointments, manage complex medication regimens, organize home health care and visiting nurse appointments, store powerful medications, and track, monitor, and report changes in their health status. It's a tough order, especially for people like my father, who do not know or understand the health care system, and find its workings difficult to navigate.

The typical week of sick time provided most employees may be enough if you get hit with the flu or a cold. But what happens when you have a chronic condition, such as Crohn's disease, multiple sclerosis or diabetes, and the time off you need exceeds your number of sick days? What protections do you have if you require major surgery?

Two recent online posts build on topics we've explored on the Prepared Patient Forum previously. One on finding and using patient navigators/advocates, the other on making the most of your health care by working with your pharmacist.

"Nagging is still nagging, whether it comes from your phone or your mom," says Jessie Gruman, a social psychologist who heads the Center for Advancing Health, a patient-advocacy group out of Washington, DC. in the recent Boston magazine article, Are Smartphones Changing What It Means to be Human?

If your computer has ever slowed way down you may have been advised to "defrag," which puts all parts of a file together in the same place on the drive, enabling it to run faster and more efficiently. In much the same way, your health care might need to be de-fragged.

Things are different for me now. Today I belong to that group of people with serious illnesses who spend lots of time in doctors' offices, diagnostic labs, and imaging centers. I quickly discovered that I had some interesting choices about my care.

Health literacy isn't just about understanding clinical directions for self-care, such as how to take medications prescribed by a doctor, or how to change a bandage and clean an infected area. It's also about how to effectively navigate one's health system'and that skill is in short-supply'

We are all going to have to become tougher and smarter, even when we are sick if we are going to benefit from the health care available to us. What is it that we really need to know to do this successfully?

We patients are always tourists in the world of health care. Whether we are coming to our doctor's office to rule out a strep infection, a clinic for a bi-monthly diabetes check-in, or a hospital for surgery, we don't work here.

Those involved in health care and HIT may have noticed the increased federal and private sector discourse around "consumers" and meaningful use. This week's Inside Health Care collects some recent posts that discuss various new tools, programs, and enhancements aimed at providers, patients, caregivers, and members of the public.

Each of the four times I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.Over the years I have listened to hundreds of people describe the same experience following the diagnosis of a serious illness. As the number of physicians, diagnostic test sites and treatment options have grown and the lack of seamless, coordinated care persists, the majority of patients and their loved ones struggle to find the right care and make good use of it.

All the talk about information technology in health care was just an abstraction to me until it actually came to my town. I read about all the money the federal government was spending to spur the development of electronic medical records, but most of my records were still stored in those vast walls of color coded folders. Then my medical group introduced a new IT system that allows patients to do a lot of fantastic things online ' for FREE!

It was only a small hole in the pavement in front of my building last fall. But the seasonal snow, ice and salt, a dramatic increase in traffic and the neglect of a cash-strapped local bureaucracy has produced a honking big pothole that slows a lot of people down. We face a similar figurative pothole as vital health-related activities such as appointment scheduling, interaction with providers and comparative cost and quality information migrate to the Web.

The outsourcing of work by businesses to the cheapest available workers has received a lot of attention in recent years. It has largely escaped notice, however, that the new labor force isn't necessarily located in Southeast Asia, but is often found here at home and is virtually free. It is us, using our laptops and smart phones to perform more and more functions once carried out by knowledgeable salespeople and service reps.

iHealthbeat is reporting that, according to a PricewaterhouseCoopers Health Research Institute report, health care providers might not meet Stage 2 meaningful use rules unless they more actively engage patients about their role in the use of health IT. Although the National Coordinator for Health IT, David Blumenthal, has dubbed 2011 the beginning of the "era of Meaningful Use", it is clear that it is not clear what Meaningful Uses actually means.

As far as my chemo nurse Olga* is concerned, I can do nothing right. She scolded me for sending an e-mail when she thought I should have called and vice versa. She scolded me for going home before my next appointment was scheduled. She scolded me for asking to speak to her personally instead of whichever nurse was available. She scolded me for calling my oncologist directly. She scolded me for asking whether my clinical information and questions are shared between my oncologist and the staff of the chemo suite. I could go on'

What's in a word? Or, even one letter of an acronym? Some people use the terms electronic medical record and electronic health record interchangeably. But here at the Office of the National Coordinator for Health Information Technology (ONC), you'll notice we use electronic health record or EHR almost exclusively.

A recent report from the President's Council of Advisors on Science and Technology calls upon the Federal government to facilitate the widespread adoption of a universal exchange language that allows for the transfer of relevant pieces of health data while maximizing patient privacy. Despite providing some very useful and important perspectives, the report also drops the ball in a few key areas.

It could be a broken wrist, or a life-altering battle with cancer, but sooner or later most patients run up against the diagnosis that sends them from their primary care doctor's care into the hands of a new physician. In medical circles, this transition is called the "handoff" a casual name that conceals the complications and risks of this journey.

A collection of patient voices from around the web. This week's roundup includes: Christine Miserandino & e-Patient Dave on The Spoon Theory, Amy Tenderich with gift advice, and WarmSocks on keeping an emergency supply of meds.

Doctors, lawyers, researchers, and hospital CEOs all have something to say these days about Accountable Care Organizations (ACOs). A collection of web posts includes: Frank Pasquale with Concurring Opinions, Anna D. Sinaiko and Meredith B. Rosenthal in The New England Journal of Medicine's November Perspectives, Vince Kuratis on The Health Care Blog, Jim Sabin on KevinMD, and Paul Levy on Running a Hospital.

KevinMD hosts a range of clinicians who comment on the electronic medical record. Guests include: Dr. Christopher Johnson, pediatric intensive care doc, who blogs on ChristopherJohnsonMD; Jared Sinclair R.N., an ICU nurse and pre-medical student, who blogs at jaredsinclair + com; and Angienadia M.D., a Yale intern, who blogs at Primary DX. Read what they have to say about EMRs.

Long gone are the days when all nurses sported identical uniforms and only physicians wore white coats and scrubs. Today, when visiting your doctor's office, it can be difficult to know with whom you're speaking and what role they play in your health care.

The Robert Wood Johnson-funded Project HealthDesign primer on Personal Health Records (PHRs) describes the new PHR both as a repository for information related to one's health care and a way to record observations about daily living (ODLs). We're meant to track these observations the amount and quality of our sleep; what we ate; our blood pressure; our symptoms in the belief that such information will shape daily decisions and allow for a more productive discussion with (our) clinician.

We can be excused for thinking that our doctors have a computer program that allows them to track our health history and forward relevant record to a specialist to whom they are referring us. After all, when I walk in to my provider's office, the receptionist is sitting in front of a computer; plus my doctor makes use of other computerized devices for measuring my temperature, blood pressure, weight and heart rhythms.

Sooner or later, most patients run up against a diagnosis that sends them from their primary care doctor's care into the hands of a new physician. In medical circles, this transition is called the "handoff" — a casual name that conceals the complications and risks of this journey.

* The Center for Advancing Health was a nonprofit organization founded in 1992, supported by individuals and foundations and based in Washington, D.C. until its closing in 2014. Supported by the Jessie Gruman Memorial Fund, cfah.org resources will remain online until January 2020.

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